She Can’t Walk. Yet She Is Helping Others With Muscular Dystrophy Become Independent

Often when we face challenges in life we get disheartened and give up. Nishtha is an example of sheer courage as she has been fighting muscular dystrophy for several years now, not allowing it to make her a “dependent”. Not only this, she is on a mission to spread awareness about the cause and is helping similar patients to overcome this disability and lead “normal” lives. Read her inspiring story of courage and dedication.

The wheels on her walker screech a bit as Nishtha seeks its support to move. Afflicted by the rare Charcot-Marie-Tooth disease, the wasting away of muscle tissue, led to a life long battle. Movement was the key, and Nishtha realised at the age of 11 that this very movement for living a normal life would get restricted and make her “bed ridden”.

In simple terms, afflicted by a form of Muscular dystrophy, Nishtha would have been a “dependent”all her life. And then TB added to her woes. But her resolute self did not allow her to deter.

There is no place Nishtha can’t go with her amazing scooty.

Her father, who she lost early in life, had given Nishtha a mantra – “Always think of people whose suffering is far worse than yours and live the life given to you in the best possible manner.” This mantra makes Nishtha a resolute individual, who with her untiring efforts, motivates and supports other individuals afflicted by Muscular dystrophy.

After completing her graduation from Junagadh, Gujarat, Nishtha further acquired a post-graduate diploma in Human Resource Management. This upward movement in her life was possible because she sought help and support to move distances – on her customised Scooty. At present, Nishtha works at IIM-Ahmedabad, making her financially independent.

As she battles with her own physical conditions every single day, she never forgot the mantra given to her by her father. That mantra was to soon come alive. Nishtha had a life-changing experience when she met Ms Sanjana Goel of the Indian Association of Mascular Dystrophy (IAMD). This gave Nishtha an opportunity to take active interest in the field of empowering and rehabilitating other individuals afflicted by Muscular Dystrophy.

Nishtha’s first opportunity to help and motivate others came when she coordinated the 19th National Medical Awareness Camp of the IAMD at Ahmedabad. The camp was a huge success. 144 individuals afflicted with various forms of Muscular Dystrophy participated and got a new perception towards life. Nishtha was the motivating factor – a girl who had journeyed from being bed ridden to becoming a mobile, active and vibrant individual. For the participants, Nishtha made a perfect role model. This event was instrumental in launching the Gujarat Chapter of IAMD that Nishtha heads.

This camp gave insights into the needs of those afflicted by various forms of Muscular Dystrophy. To widen the scope, similar camps were organised in 6 districts of Gujarat. This gave an opportunity to those individuals who were struggling and coping on their own to come out and share their experiences with other families in similar situations.

Nishta has been spreading awareness about the disability and helping the patients to overcome this reality.

Strategically, these camps were organised by local NGOs who would later support the follow-up actions. These camps not only raised awareness and motivated the afflicted individuals and their families, but also raised the awareness levels of local doctors and NGO personnel.

Camps helped Nishtha understand two key needs. One was enhancing mobility through wheelchairs. The second was to organise fun activities to bring some succor in the otherwise dour lives of the individuals and families afflicted by Muscular dystrophy.

But, Nishtha needed money to address these needs. Nishtha has been campaigning with numerous individuals and organisations to get them to donate wheelchairs so that those afflicted by the condition can manage restricted movement. She is also raising money to organize various picnics.

Individual donors never disappointed her. She has been able to help 16 individuals access wheelchairs so far. For example, Hetal Joshi from Rajkot is a married woman with a young son. But, she was depressed due to her sickness and her family was concerned too. Nishtha realised that making her mobile would instill confidence in Hetal. Using Facebook to garner donations, Nishtha was able to provide a wheelchair for Hetal.

Similarly, Manish from Modasa was employed at a shop. His friends would drop and pick him. But that increased his dependency on others. Nishtha donated her own wheelchair to make life easier for Manish.

Nishtha also realised that many of the 12- to 15-year old individuals had never been outside their homes for entertainment. The picnic was their first outing. At one such picnic, a swimming pool made the picnic memorable. The three picnics that she has organized have been tremendous hits.

An avid traveler, Nishtha has completed the arduous Amarnath Yatra because of her sheer will power. Her courage and determination brought her a lot of recognition and she has received many awards like the Best Employee award (for physically challenged) in 2011 from the Government of Gujarat, Women’s Achievement Award from BJP IT Cell in 2013, while her work was recognised and honoured under the “My Choice for Equality” Global Ethics Forum at IIM Banglore in 2014.

Nishtha has a loving, caring and supportive family. First her mother and now her husband Krishna have always encouraged and supported her. An able-bodied Krishna helps Nishtha lead a normal life, attends to her work and supports her in all her endeavours in raising awareness and rehabilitating other individuals.

As a mother, Nishtha strives to lead a normal life and help others follow suit. Her little daughter is her new Akansha (hope) – for life.

About the Author: Sanjay is a development worker, focused on enhancing lives of women. He has worked in maternal and child health, water and sanitation, HIV and is currently focusing on sanitation access to women through micro-finance. He is the CEO of Shanti Life India Foundation, a new start up that aims at providing credit access to vulnerable women for sanitation and small businesses.

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Kanan Jaswal

I salute the spirit and determination of this young lady. May she continue to shine a beacon of light into the lives of all those who had given up hope!

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